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Old 01-19-2011, 08:52 PM   #1
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Exclamation Mom is now on Hospice!

MIL has entered into hospice in the nursing home. She was moved from the NH home that we loved her being there, however it was toooo hard for us to see her as often and brought her closer. During that time I became very ill and hubby had to take the reigns and he then became sick. In the midst of this she was evaluated by hospice and they said she was in the late stage 3 of Dementia and Alzm and would be entering into the finial stage. That was right before Christmas. We stuggled as to what to do for her on Christmas. Finially decided to bring her chinese food and home made SF cheese cake. And she barely ate the chinese and she did eat the CC with me feeding her. She was so frail that we had a hard time eatting ourselves. FIL is in the same nirsing home and he was there with us. He has been dign with cancer in the airways (he has a trac) and will be starting kemo treatments after he arrives back with his natural family next month. The docs are not optomistic about his chances.
We wanted to make this last Christmas a special one for him and us to remember. mom of course does'nt remember.
She doesn't know her son's or her husband, but she still seems to remember me (in theroy that is) she always see's me here and there in NH but complains that I am ignoring her. LOL! And when I am there with her she thinks I am her daughter (the one that gave us so much trouble!) Which we haven't heard from her since may!

Mom can't eat on her own or even hold a glass anymore. She can't even stand up without constant help.

I have gone back in the NH since I am doing better only to discover that she is wearing other peoples clothes, lost BOTH pairs of glasses, and her shoes were caked in with pee! I blew my top at the nurses (in a nice way of course!) and let them know that they weren't doing their jobs!
They told me that they don't weight her because that was hospice's job. And it was hospices job to feed her (three days a wk- what about the 4 days? does she starve?) Another words they were passing the buck! I contacted the Head Admin. and told her I was VERY upset!
I came in there 4 days stright and her bed wasn't made (4 pm) her roomates was. Her hair wasn't combed, and the list goes on!
Today my BIL came in there and everything was done!

We both wish she was back in the other NH for her sake, but for ours she is closer and we can keep an eye on her. I just don't think she is getting the care she needs.

I still have to talk to hospice and find out just what they do for her.
And still make sure that I keep an watchful eye on our health!

 
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Old 01-19-2011, 10:54 PM   #2
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Re: Mom is now on Hospice!

It is difficult when you have to check behind the staff to be sure everything is done. I don't complain about the clothes issue. Mom show up in clothes that are not hers and I find her clothes in other people rooms. What I do know is that the ambulatory ones... my Mom included... are worse than teenagers about swapping clothes. Sally goes in Mom's room and drops off her jacket because she's hot, the aid sees it and puts it in Mom's laundry, then Mom shows up with it on a few days later. Or Mom walks out into the commons area and picks up a sweater that belongs to Joan. At least I know it is all in the unit and eventually it will find it's way back home. I spent lots of time search for appliances... hearing aids, glasses, etc. They try hard to keep up with everything but sometimes it is just not possible. The latest is Mom's prosthesis bras. After a thorough search I just alert the staff. They laugh and put out an APD for the bra. APd is for Another Piece Disappeared. It will eventually reappear

We did not take Mom out for Christmas. I felt she would be better off in her safe secure surroundings than in the chaos of our family celebration. My sisters from out of town, thought upset with me for the decision, visited with her that day and just having 5 visitors at a time was enough to upset her for a while. She didn't understand the gifts or the special treatment. It was all upsetting to her. I spent Christmas Eve with her and let her follow her normal routine and all was well. She enjoyed the sandwich which she usually eats for lunch. I have found that it is our expectations that get us into trouble. We want to make something that is not there. Mom has no idea when it is a holiday. All she know is that there are strange things happening that she doesn't understand and that is unsettling. I would love to have a special Christmas with Mom... but those things are in the past for Mom. She does so much better with the "normal routine".

The taste of sweet is one of the last to leave. I bet 99% of all the dementia patients I have come in contact with have a voracious sweet tooth. They will balk at veggies, nibble at their meat, and consume anything that is sweet. I have fooled mom a few times by putting sugar on something I wanted her to eat. She too will pick at her food and then gobble up the cake!

As for Hospice.... here they are in addiction, not instead of the care staff at the facility. Dad got assistance with his meals from the staff. They weigh him, gave him his meds, cleaned him up, change his bedding,.... basically anything they would do if Hospice was not there. The Hospice staff attended to his "additional comfort needs" and medical checks such as vital signs. There is a protocol so everybody knows what their job is and they work wonderfully together. If things don't straighten out and they keep blaming Hospice you might want to have a meeting with the caregivers and Hospice to determine who does what.

I am sorry to hear about your FIL prognosis. I am sure that is difficult. Will he be leaving the nursing home he is in now?

Sometimes we have to make trade offs. Mom's facility is a 35 minute drive (on a good day with no traffic snarls). There are closer facilities but that is the one I chose because they are superior. It is also 35 minutes in the opposite direction from my sister that helps. So yep I have a bit of a drive but for the better facility and the help of my sister that is where Mom needed to be. In your situation you did what was best for all involved and we do have to think of ourselves in this situation as well. Just keep a check on what is going on and use your persuasion to get what your MIL needs. As the facility director told me... "You have the power because you pay the money!" I so love the new facility director

Glad you are feeling better and I hope hubby is also. Remember to take care of yourself first because you can't take care of MIL or FIL if you are sick!

Love, Deb

 
Old 01-20-2011, 07:01 AM   #3
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Re: Mom is now on Hospice!

You are sooo right Deb, that is why IAM going to take care of me and hubby first. This is a HARD lesson to learn and I hope we can get the "newbe's to listen" I listened to late I think. I did try but the damage was done before I got to this site!

No Dad is leaving around the 15th of Feb he says, I think it will be end of Feb. He will be flying with my BIL (the one that deserted mom and dad!) We don't trust him but right now he showed up unannounced to our home 10days before Chrsitmas saying he was homeless. Ny husband has taken him in till FIL leaves with him. Yes this has been a strain! I am trying to let it go. And counting down the days till he leaves. There has been signs that FIL has Alzm also. So it's good that his natural family can care for.

I guess your right about the clothes. I had to buy 7 pairs of pants and 7 shirts because she has gained so much weight! Although she hasn't eatten her food. So I think your right she likes the sweets.

I think the hardest thing for us is to see she doesn't know anyone. However she seems to know when FIL is visiting although she can't give him a name now.

I am keeping up now with her care, I am confused as to what the NH and hospice is suppose to do.

She has gone down so fast. she has had four UTI's in the last 6 months and Cdief and eye infection. Each infection seems to take her down faster. The Hospice CM said he beleived she won't make it to the end of the yr.
Some ways we hope that to be true as she isn't there anymore. Sound cruel?

 
Old 01-20-2011, 12:12 PM   #4
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Re: Mom is now on Hospice!

So FIL is going to fly off with a homeless BIL... HUH? WOW I have to ask where they are going and how the BIL is going to care for the FIL who has early signs of dementia and cancer? Hopefully there is a plan in place?

Is your MIL on steroids? That could be an explanation for the weight gain. Beyond that it is probably the sweets. I have stabilized Mom's weight for the time being with sweets. Sweet potatoes, baked apples, sweet and sour chicken... you use what you know to sneak in the good stuff!

Of course, at some point, MIL is not going to recognize the grown adults that are standing in front of her. You have to understand that her ability to retrieve memories is back sliding in years. Her son may be a toddler or a teenager. You maybe a young bride. How does that connect with the people that are standing in front of her. I have told this story before. Mom was putting a baby doll on a cabinet in the hall. I ask her why and she said... "I am putting Deb in time out!" She had NO idea who the lady standing beside her was but she sure did remember me in my rambunctious childhood years. Another time she looked at me and said.... "Dad is with Deb!" She didn't know that person beside her, me, but she knew that Dad would be safe with Deb. So it is not that she doesn't remember those that are important in her life... she just doesn't recognize us in our current appearance.

Beyond that I have found that Mom does better with voice recognition than with visual connections.... even though her auditory processing is worse than her visual perception. I am sure that sounds backwards but there is an explanation. She is very aware of the fact that the gray hair and wrinkles standing in front of her is NOT the Deb she remembers. I am not supposed to be that old But even with her deficient auditory processing, she still recognizes my voice. The times she calls me Deb is when I am talking, she can hear me, but can not see me. Recently, on the phone, she immediately called me Deb. She knew my voice. Later that day, with me standing in front of her she had no idea who I was and talked about me in third person as if I was not there. Yet when I walked behind her and talked softly in her ear, she once again called me Deb. So.... MIL knows you, just doesn't recognize the person you have become

Four UTIs, CDief, and an eye infection.. and you wonder why she has gone down so fast. Throw in hospital visits and everything else involved in the medical treatment that she doesn't understand. Stress and anxiety is a fast track for this disease. One of the reasons medical intervention and moves in physical location are so hard on them. So far she has been able to fight back but each battle leaves her cognition one cog down from before. She is doing the best she can to battle all that she is going through. I do understand your feelings about the end of life. I enjoy every moment I have with Mom and had with Dad... but for them I did accept that the end would come and did very little to alter that path. It was not that I wished it... I accepted it. That thought process will take away those guilt feelings that tend to creep in when we think we are wishing the end. We don't have a lot to say about the ending.... all we can do is accept it.

As for Hospice.... ask for a meeting between the facility nurse and Hospice to iron out the duty boundaries if that situation does not improve. A clear definition of expectations will take the guess work out of it I am just glad those boundaries were set at Mom and Dad's facility.

Hang in there.... you are doing well

Love, deb

 
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Old 01-21-2011, 07:00 PM   #5
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Re: Mom is now on Hospice!

Are you kidding my BIL is 54 and has NEVER held down a job for more then 2 yrs and Him have a plan? Hah!. I told them both that when they get this apt that BOTH names have to be on it... today he calls me in a panic and says " they told me I have to be on the lease!" DAH! I'm an Ex Admin for 30 yrs. Everything I do is order, order and order, When I try to tell these guys what needs to be done, it's like talking to the wall!
FIL just made BIL HCP (he didn't want us to be mad!... di we look upset!?)
We are thrilled to get him on his way!

Today, We meet with the lawyer about guardianship and legal seperation. Come to find out LS is way to expensive! And we may or may not need guardenship! So We feel as befunaled as before we had HCP & POA.
Dad is leaving the state and wanting nothing to do with mom after he leaves.
I don't know I just can't wait to end this chapter!

 
Old 01-28-2011, 05:38 PM   #6
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Re: Mom is now on Hospice!

Hay guys there is a new occurance! We got a call today and mom is refusing to take any meds, the nurse called and asked us uf we had Rogers Guardianship. We were JUST looking into this and wow the cost of getting this is 2 to 3000.00. Blew us away. We have POA and HCP but because mom is on Sarequil we have to have this rogers. Any info on this? We did talk to the lawyer and he told us that in state of Ma we need it.

Some nurses are very patience with mom and get her to take her meds, others are impatience and don't want to bother.

 
Old 01-28-2011, 09:47 PM   #7
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Re: Mom is now on Hospice!

That is something specific to Mass.... and an outgrowth of the new health care that you have which is supposed to be a model for our "national heath care". The more I hear the more it scares me. I have read a little about the Rogers Hearings but do not feel comfortable with the new laws to comment on them. That is something that would take a Mass lawyer to explain... but it is complicated with two different kinds of hearing and hearings for different things... and intended to keep people from receiving treatment or medication that they do not wish to receive. This is what you get when you try to legislate good sense Can't be done!!! Good luck on this one!!!

Love, deb

 
Old 02-01-2011, 08:02 PM   #8
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Re: Mom is now on Hospice!

Oh I agree, the health care that is in Mass is the MODEL for the USA! AND it STINKS! And Lawyers are in heaven! And their prices are hellish!
Deb

I'll tell you I can't get FIL out of here quick enough!he is soo lazy and such a pressie that he monned and winned for hrs called hes at work to say he couldnget a poop out but wouldn't get out of bed and wanted a bed pan. The man is LAZY! all he wants to do is lay in bed and watch sports!he's been this way the whole time he's been in the NH and now my BIL is seeing it. Of course he is just as lazy!.
Deb I am tired of all this. We are taking care of mom and she isn't doing well. I have just secured her creamation and burial. Thurs we see the lawyer for a Rogers Guardianship.
Dad isn't even interested in all of this all he wants to do is leave for WA (which is fine with us) but now he is gripping at the cost of the lawyer. TOO BAD!
Then we are putting up with FIL AND BIL lazyiness! We don't need this on top of hubbys sudden illness!
Then I have had another relaps myself 1st getting ST and the flu and then resptory infection. We just want them BOTH to leave now! Only they won't leave until March 1st. I hope we can muddle through this. We told BIL to take over HCP and we are telling FIL to find a new POA!
This is just tooooo much on us right now!

Mom's not holding her spoon any more and can't feed herself. She is refusing meds and getting very upset. I can;t be there because Im sick and hubby works! Hospic is stepping in but their not there long enough.

 
Old 02-01-2011, 08:46 PM   #9
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Re: Mom is now on Hospice!

Frustrated.... calm down. You have hospice on board and your MIL is in a facility that cares for her. She is ok. Between hospice and the facility they will be sure she gets what she needs. You have the final arrangements settled for your MIL and the lawyer appointment. You have her care under control. Your BIL is there and let him take care of FIL's needs. They can be lazy if they want to. You can't change this behavior and should expect nothing more than what they are. It is 4 weeks until they are gone. Until then just let them be and go on with what you need to do for yourself and your hubby. You can't change what either one of them are... but you can change your reaction to them.... and keep in mind that they will be gone four weeks!

Love, deb

 
Old 02-02-2011, 05:36 PM   #10
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Re: Mom is now on Hospice!

Holy Cow...You do have your hands full but think of the progress you have made.

Just get through today. You can handle only so much. Don't think of it as another month...just one more day.

Get FIL some prune juice and make him drink a cup or so everyday so it doesn't get "stuck" anymore. We did have that problem with my mom but a daily dose of the juice solved that one.

If he is in bed watching sports all day I think that could be a good thing...can you imagine what it would be like if he wandered the house all day. Keep him in bed....til it's time to get him to the airport.

Love, Meg

 
Old 02-09-2011, 11:13 AM   #11
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Re: Mom is now on Hospice!

Quote:
Originally Posted by fustratedbeyond View Post
Hay guys there is a new occurance! We got a call today and mom is refusing to take any meds, the nurse called and asked us uf we had Rogers Guardianship. We were JUST looking into this and wow the cost of getting this is 2 to 3000.00. Blew us away. We have POA and HCP but because mom is on Sarequil we have to have this rogers. Any info on this? We did talk to the lawyer and he told us that in state of Ma we need it.

Some nurses are very patience with mom and get her to take her meds, others are impatience and don't want to bother.
I have never heard of this rogers guardianship. Can you go to a paralegal for it or a place like we the people or get it off the internet and have it notarized? There has got to be a less expensive way. You deserve a hug. It sounds like things I have seen go on in nursing homes while volunteering and while being there doing clinical's as a certified Nurse Aid. Remember these people don't get paid very much. Often the family would leave big notes on the closet doors saying family does all laundry so that other's didnt end up wearing their clothing & same with shoes. Sometimes families would also have a companion come in from a local agency when they couldn't be there. The nursing home should know of some. I posted in another reply you can always place an ad on places like craigs list or sitter city for part time help a few hours a week. There are lots of people out there that have part time jobs that need some hours to fill in who enjoy being around elderly people. I always have my whole life. I wish you and your family all the best.

 
Old 02-09-2011, 11:53 AM   #12
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Re: Mom is now on Hospice!

But you do have to be careful who you hire and check them out thoroughly. When caring for someone with dementia there is too much room for abuse of many kinds. A "volunteer" actually attempted to swindle money from my FIL while he was in a care facility. He thought she was his grand daughter, and she let him think that, as she tried to get his signature to transfer funds. So you can't be too careful.

Love, deb

 
Old 02-09-2011, 05:07 PM   #13
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Re: Mom is now on Hospice!

We had our "3 month meeting for mom" and discovered that MIL had a real infection under the folds of her breast and I asked if she had it under the folds of her stomach? and they told us she had! I was floored that they were doing something for her breast but not under stomach!
We also found out that they were NOT weighting her, because it was hospices respondiblity! Wow! Is this normal to pass the buck?

They told us that she has to have assist in feeding.

She is refusing meds that is why we have to have to "Rogers Guardingship"

We are amazed at the NH lack of consistancy! I can see where we have to stay constantly in their fannys!

 
Old 02-09-2011, 05:31 PM   #14
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Re: Mom is now on Hospice!

Yes you do have to be careful with who you hire. In the state of California you can get background checks on people & the agency I work for does that as well as drug test before hiring. They sell testing kits. There are also online places where you can do a background check for a small fee too. References are always good in addition. I have heard about theft at these places but also can't see leaving anything of value with a family member.

When my great aunt was in a nursing home everyone in the family took turns going to see her constantly to make sure she was well taken care of (including at meal times. Also one of the places I did clinicals at had a showering policy (as in certain people get showers certain days.) THAT appalled me. The thought that each person didn't get a shower everyday made me angry. Everyone was also in a wheelchair and everyone also had a diaper with exception of maybe 3 people. I was told it was because they were short staffed. Then I looked them up online and saw all the complaints about them. The following week they were visited by the state people who inspect and they were given a good review because the minute the inspector came they called people to come in & work extra and the staff was told to do things differently while the inspection team was there.

Personally I will be moving back in with my folks to care for them so I wont have to deal with the sort of things that happen in a NH.

But for those of you that do you really do have to have family that cares come there & come often to make sure things like the rashes etc don't happen. I can recommend an excellent cream that will get rid of it in a day or two.

 
Old 02-09-2011, 07:09 PM   #15
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Re: Mom is now on Hospice!

Or just have the right facility Abrnii. There is a shower schedule at mom's facility but it is more than once a week. Beyond that if they have "accidents" they are showered at the time rather than waiting for the next morning or scheduled shower. Yes, you do need to be vigilant. There is more work than staff at times and sometimes things do slip through... but I can say I do not have any major complaints about Mom's facility.... and I never had major complaints at the facility I worked in.

Yes, you do need to visit frequently not only to check up on the staff but to visit with your loved ones. I enjoy spending time with my Mom, getting her involved with activities, and taking her on adventures. She loves to rediscover the popcorn machine over and over! We are also our loved ones advocates so we need to keep up with what is going on. We have ONE .... well I had two residents... and the facilities have many.

I hope it is possible for you to care for your parents. It was not a possibility for me. My own family responsibilities and being 3.5 hours from Mom and Dad did not make that possible. Some here also have young children who do not need to be exposed to the antics that are possible or the lack of attention they get when Mom is taking care of grandma. Some understand the 24/7/365 burden it will place on you and opt not to undertake what they know they can not do. There is nothing wrong with knowing your limitations. And some of us have parents that do not work out at home because of behavioral issues, wandering, or other complications.

As for me.... I had Dad with Vascular Dementia and Mom with Alzheimer's. They refused to be separated. We tried it for a year and it didn't work at all. In hind sight I am glad we moved them when we did because wandering became a huge issue with them both and major behavioral issues. I have no regrets that we made the decision we made to have them in a facility. I did a huge check out of the facility they are in now and I have no regrets as to the choice I made there.

I felt as you did for a while... until the reality of the situation hit me square in the gut. Some do manage but many burn out. Part of the problem is that this disease can last for years. It's not a few months and done... it's years and years. Dad was diagnosed for over 10 years before his death and had to have somebody with him most of those 10 years. Mom did it until her diagnosis. She has been diagnosed for over 4 years now and still going strong All told we now have 11 years invested in caring for Mom and Dad. So don't limit your options!!

Love, deb

 
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